T.J's Story

Images Captured by Rhonda DeMone Photography

Meet TJ, a. strong little man who always keeps smiling despite everything that he has endured. When TJ was six months old, his parents knew something was wrong. While he wasn't progressing at all, his doctors tried to reassure them that all babies progress at different rates. But by the time TJ was 18 months old, he was developmentally only 6 months old, and after seeing a neurologist, they determined that he had cerebral palsy and a global delay. 


It was devastating for his parents to never hear their child speak, to never know how he is feeling, and to not hear him say the words "I love you."  And through this, they've learned to not take things for granted. They say that the most amazing thing through this has been seeing how children around him have grown more compassionate and curious to learn about children like TJ, and seeing people fall in love with his infectious laugh and handsome smile. His mom says, "I am inspired by just how strong a person is inside of his little body. Despite all the pain he has endured with multiple surgeries, he just keeps smiling. I swear, he even comes into the recovery room smiling!" 


TJ is very close to his best friend, his Grampie, who is the only person who hears what TJ is saying without even saying a word. They have a special bond that simply cannot be explained. 


His parents constantly worry about TJ and what his future holds, but they know that his brother and sister will advocate for him and love him. They hope that he will grow up being happy, healthy, and being accepted by others. TJ's mom sums up her feelings with this quote she often uses to describe her thoughts, "Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." 
And so far, TJ is proving to be the best teacher. 


Story by Jag Nagra

Ronan's Story

Images by Teagan Photography

Tiny Light Ronan is a pure soul who loves unconditionally.  He is only 7 years old, but already, he has taught his family just how precious life can be. 


Ronan’s mom Natacha says she always knew her son was special and it was almost a relief when doctors diagnosed him with autism at the age of 2.  The family was living in Saskatchewan– the province with the least support for autistic children at that time – and to give Ronan the best chance possible, they made the difficult decision to move. 


It wasn’t easy for Curtis and Natacha to come to terms with Ronan’s diagnosis, but they love him unconditionally.  Dealing with other peoples’ reactions has been challenging.  Ronan roars in church when babies cry.  He screams when he is hungry or tired.  He can only hold conversations with his parents.  But there is so much more to this Tiny Light.  He enjoys riding his bicycle and downhill skiing.  This little monkey can climb anything and has no fear of heights. “Every developmental stage and life milestone is such a labourious process, so when he succeeds and overcomes, it is such an incredible and euphoric experience it is impossible to stay sad.” 


Ronan’s parents dream he will finish high school and dance with a girl during his prom night, all dressed up and looking dashing.  Not too hard to imagine for this Tiny Light! 


Written by Elaine Yong

Madison's Story

Images by Kristy Klaassen Photography

Meet Maddison Morris. She loves to sing, dance and act. Maddison has psoriatic arthritis. Her family started asking questions when they first noticed that she was having trouble putting on her pants and when she began sleeping a lot. Her older brother had similar symptoms before he was diagnosed with arthritis, and her aunt has lupus so Maddison’s mom was worried that she may have lupus. She was seen by the rheumatology department at Children’s Hospital, and was diagnosed with psoriatic arthritis.


Psoriatic arthritis is a systemic rheumatic disease that can cause inflammation in body tissue away from the joints, such as the eyes, heart, lungs and kidneys. Although Maddison does not have psoriasis, she was still diagnosed with this type of arthritis. She faces doctor’s appointments, blood tests and treatments for the rest of her life.


Maddison has to take many medications each day, and she suffers with stiffness for two to three hours every morning. She was very happy to learn that she will still be able to continue her dance classes, but is sad that she will not be able to go to school anymore.


Maddison amazes everyone with her positive attitude, spirit, and her strength and resolve to get better. She loves to write songs and do other people’s makeup.  She is a great helper, and her determination to dance makes her mother’s heart smile.


Story by Erin Lylyk

Grace's Story

Images Captured by InView Images

Meet Tiny Light Grace. Grace is an amazing big sister. She loves to snuggle in bed with her little brother every morning. She loves the swings, and is an amazing bike rider. Grace loves getting into mischief, and is often found Skyping her friend Nathan!


When Grace was three-years-old, she developed a cold. Her parents began to worry when it lasted longer than her usual two-week colds. They became very concerned when Grace’s face began to swell. A few weeks later, Grace was diagnosed with Focal Segmental Glumeriosis, a rare kidney disease. This meant that her kidneys were not functioning properly, and were letting all things, good and bad, flow out of her kidneys.


Because of a lack of information, her parents expected a round of steroid treatment to take care of the problem. In reality, their journey was just beginning. It has been difficult watching their daughter, as strong as she is, suffering through complications of being immunosuppressed, and at the end stage of chronic kidney disease, while waiting for her kidney transplant. Still, Grace never complains. Even while she was on life support, she fought hard to communicate even though it was hard; not wanting her loved ones to worry.


Grace does what she knows she has to do! She drinks three liters of fluid daily, and takes a multitude of pills to try to maintain her kidney’s health. Grace’s parents do what they can to decrease risk of infection, often having to isolate Grace. They are thankful for the families that they have met with similar circumstances. “Although no two children even with the same disease are the same, the sharing of experiences has really normalized our exceptional life circumstance.” They are thankful for all of their support, especially Grace’s Grandparents…”Our backbones”.  


Story by Angela Stephen-Dewhurst

Meet Alex

Images Captured by Leanne Liakos Photography

Meet Tiny Light Alex.  Alex
loves driving around with his Dad listening to “cool” music.  He also loves
to sing.  Several music teachers have told Alex's parents that he has
perfect pitch!

Alex was diagnosed with severe Autism at two-and-a-half years old.
His Mom had suspected that something was not quite right from the time Alex was
16 months old.  Alex had a few words that he spoke on occasion; he then
stopped responding to his name.  When his Mom noticed that he was no longer
reacting to his family members, she began researching.  Despite the fact
that her research kept coming to the word Autism, Alex's diagnosis
still came as
a shock.  They were devastated.  Because of the wait to see a
developmental pediatrician, they had lost a whole year.  "A whole year of
lost time when all of the 'experts' tell you how imperative early invention is.
Gone."  Alex's father was in shock and denial, hoping it was a misdiagnosis
and that they would find it to be something less debilitating.  This was a
period of transition for Alex's Mom.  She was armed with a year’s worth of
research, she was grieving, but now they had an official diagnosis,
meaning that
Alex could now get funding and could start therapy.

Alex can now do many of the things that they were once told he would
possibly never do.  He has loving relationships, he laughs at funny things,
feels remorse and last year even said 'I love you Mommy', unprompted.  He
had learned how to use a computer, and is great at using an IPhone and other
touch screens.

Things are still difficult for this family.  Alex is prone to
meltdowns, and often needs to be carried away when this happens.  He can be
very impulsive, making restaurants tricky; Alex will often get up and start
eating food off of other tables.  His parents live in fear that he will
leave the house and get lost.  In a way this journey has been hardest on
Alex's Dad who dreamed of teaching his son life experiences and playing sports
together.  "Even though there are special little moments and milestones
here and there, everyday you live with and look at your beautiful child, whom
you had all of these wonderful plans for, and everyday you are reminded of what
could have been and may never be for him."

There are many therapies out there.  Alex's parents want to stress the
following to parents who have kids with Autism: you have to remember that what
the experts say to do isn't always the right thing for your child.  You are
your child's best advocate.  Alex's parents hope that Alex will be able to
fully communicate one day and that he will be able to work to decrease his
frustration.  "We hope that he will have meaningful friendships and that he
will have lots of people in his life who are true friends.  I hope he is
able to love and be loved.  I just want him to be happy."

Story by Angela Stephen-Dewhurst

Meet Adam

Images captured by End Of The Road Photography

Meet Adam. In only two short years this Tiny Light has already taught his parents so many things. They’ve learned to trust in God, to ask for and accept help, and that no matter how hard things get, the world keeps on turning.

When Adam was born seven weeks early, they knew right away something wasn’t right. Five days later they were given the diagnosis and they struggled to deal with the news and the many emotions attached to it. Their baby had Down Syndrome and they were in a fog of confusion for the next few weeks as Adam started his life in the NICU. 


Looking back his mom wishes things could have been different. That acceptance could have come faster. "I feel a bit sad that Adam’s first two years are over. Sad that I didn't enjoy his babyhood as much as I should have. Sad that I wasted way too many tears, and hours and weeks of worry... when I could have replaced those tears and worry with love. Simple PURE and beautiful LOVE. “

Adam gives the best smiles. He loves to wave and wave and wave. He also loves to clean up. Anything and everything goes in the garbage:  his Daddy’s wallet, Mommy’s keys or his big sister’s camera! 


“We know that our little man came to complete our family. We love him with all that we have. We look forward to teaching him... and even more importantly learning from him."

Today they are looking forward to all the excitement and challenges that their future holds. Their greatest hope for ALL their children is their happiness. Their greatest goal is to do right by them.

 Story by Sue Renaud

Say hello to Cash

Images Captured by Indi Claire Photography

Spunky, sweet and goofy.  Three words that describe this Tiny Light with the effervescent smile, and charming personality.

You'd never guess it, but at only 6 months old, this happy-go-lucky little man, Cash, has been through more than most people 10 times his age.  You see, Cash was born with Port Wine Stain, a condition that creates a reddish birthmark to cover the skin that can turn into nodules, cause seizures and even mental disabilities.  Cash also struggles with Congenital Glaucoma in his left eye, that has left him with a tube in his eye, in an effort to stave off blindness.  He endures regular MRI's, Doctors visits and laser treatments, as a part of his daily life.  But you'd never guess it, by looking at him.

Jami and Darcy, Cash's parents, describe their little man as the love of their lives, saying that Cash has always been a happy, bouncing little boy.  One look at this little family, and that statement can clearly be seen.  Cash loves snuggling into his mommy, and uses his terrific sense of humour to get a laugh out of his daddy.   Wherever Cash is, smiles are sure to follow.   His presence lights up the hearts of those around him, which truly makes him a Tiny Light.   Cash hasn't had the easiest life, and will, most certainly, have many more bumps in the road.  But, with the fierce, and palpable love of his parents, support from his wonderful family, and his sweet personality; one can plainly see that he will handle those bumps with the heart, strength and courage that only a Tiny Light can. 

Story written by Samaria Kapcsos

Nicolas' Story

Images Captured By Studio 9 Photographics

This is Nicholas.  He loves playing with the computer, reading books, and he loves cars.  He is an inspiration to his family and those who know him.He has taught them that “hope is everywhere every day.”

Nicholas has been diagnosed with Developmental Delay, Seizures and Hypotonic (meaning that he has very low muscle tone, and is not strong enough to participate in regular activities).  It was discovered that he has low muscle tone after he was born, but at that time, the enormous affects were not known.  The full diagnosis came at six months old.  His parents were in disbelief that there was something wrong with their sweet baby.

Nicolas spent so much time in the hospitals that close relationships

with many doctors and nurses were made.  At seven years old, the family was able to be home for Christmas for the first time.  Now, with the help of specialized professionals, their lives are functioning normally.  Nicholas is a happy boy who is always smiling.  His seizures are under control with two medications that he is taking for this condition.

Nicholas’ parents have a wish for him; to continue to develop and

progress.  They worry about his future, and they worry about who will take care of him when they are gone.  For now they are taking things one day at a time, doing all they can to help Nicholas’ conditions.  Their excitement continues with every goal or improvement he attains, regardless of how big or small it is!  Progress is progress.

Story by Angela Stephen-Dewhurst

Meet Madison!

Images Captured by Stephanie Fieldberg Photography

This is Madison.  Madison loves Max and Ruby.  She loves to stack paper and spin shoes.  Madison also loves ice cream.  Madison has Down Syndrome and Autism Spectrum Disorder.  She has seizures, thyroid issues, and has had Atrial Septal Canal Defect with holes in her heart, which required corrective surgery when she was just three months old.


It was not until after she was born that Madison’s parents were hit with the news that their baby had Down Syndrome.  Before this news could even sink in, she was sent to another hospital to confirm her life-threatening heart condition.  “It was a rollercoaster of emotion.”


The diagnosis of Autism is a new one for Madison.  Eleven years later, her parents feel that this diagnosis helps them to understand why Madison does the things she does.  They have taken the Autism diagnosis and are now moving forward, making things work for Madison instead of against her.  Madison’s speech is limited, so there is hope that her communication skills will improve with the help of therapy.  She is a happy girl, and no matter what in life is thrown at her, she keeps laughing and finding the joy in the small things.  Who wouldn’t be inspired by this!?


Madison’s parents do worry that she will not move past the level she is at now.  “Part of learning about life is learning how to keep going…even when times get tough.”  And it has been tough for this family!  But there have been many positives, such as learning the joy and laughter that a child with Down Syndrome can bring into your life.  “There is nothing like a hug from Madison.  She puts all of her heart into it!”

Story by Angela Stephen-Dewhurst

Charlie's Story

Images Captured by O La La Photography

Tiny Light Charlie always has a smile on his face. He loves to play with his big brother and read stories with Mom and Dad. Charlie loves his toy kitchen and also toys that make music. 

Charlie has a very rare and complex condition known as Tetrology of Fallot. This condition is caused by four heart defects that do not allow his blood to carry a normal amount of oxygen. This causes the body to become cyanotic or “blue” because of the poorly oxygenated blood that flows through his veins. Charlie’s parents found out about this condition in the 19th week of the pregnancy. His parents were shocked by the diagnosis but decided to do everything they could for Charlie even before he was born. Unfortunately, Charlie was not able to be carried to full term and was born five weeks early.  It was at that point the severity of his condition became known. 

When Charlie was just over a month old, he had to have open heart surgery to repair his heart. He weighed less than six pounds at that time, and his heart was the size of a California strawberry. After the surgery, Charlie’s heart rate skyrocketed, and he had to recover with his chest open while on a cooling bed for several days. However, the support from the health care team, as well as family and friends, helped Charlie's family through those difficult days. 

Charlie’s heart condition will continue to be monitored, and he may need further surgeries as he gets older. His parents hope that he will be stronger every day, that he will be able to achieve every goal he sets for himself, and that he will see every dream he dreams come true. 

Story by Shauna Salmon